Posted on 51 Comments

When People Say ‘You Don’t Look Like You’re Blind’

Not every disability is visible

When People Say ‘You Don’t Look Like You’re Blind’

Whenever I am out & about since I still possess a residual amount of sight, I can sense people staring. But I just keep moving onward past the expectations of others and how they ‘think’ blindness should appear.

Bold Blind Beauty

Featured Article on The Mighty

Recently I became a contributor to The Mighty an online community of people who share their stories of serious health conditions, disability, disease, and mental illness. The article below is my latest entry on what caused my sight loss and life after the “there’s no more we can do for you” conversation.

Image description is in the body of the post.

It was a little over 48 years ago when I put on my first pair of eyeglasses, and the feeling of seeing clearly for the first time was indescribable. The transition was like leaving a dark movie theater and stepping outdoors on a bright sunny day. My eyes needed time to adjust to everything suddenly appearing clear and focused.

For 36 years, I enjoyed perfect vision provided I wore corrective lenses. That all changed 11 years ago with two words: macular hole. It began when I removed one of my contact lenses, and I looked in the mirror to see half of my face missing.

While I had never heard of a macular hole before, I learned the macula provides the sharp, central vision needed for reading, driving and seeing fine detail. A macular hole is a small break in the macula, which located in the retina, is the center of the eye’s light-sensitive tissue.

Though all the statistics pointed to a favorable prognosis, it didn’t work out that way for metounfortunately. I’m reduced to counting fingers, since I can no longer see the eye chart. Developing macular holes in both eyes has destroyed my central vision.

I’ll never forget the devastating news. “Ms. McCoy,” the doctor said, “I’m so sorry to tell you there is nothing more we can do for you.” Those simple words confirmed my worst fears — I was now legally blind.

The doctor told me I lived with high myopia (extreme nearsightedness) all my life. He went on to say that even though I did all the “right things,” due to the high myopia, macular holes, surgeries and glaucoma, my vision loss was irreparable.

Appearances Can Be Deceiving

Prior to losing my sight, I used to think that when a person used a white cane, it meant they were totally blind (no light perception). I was wrong. The range of sight loss is enormous and differs greatly from one person to the next. There really is an immense gray area.

Professional headshot photo of me
Stephanae McCoy

To give you an idea of my sight loss, imagine yourself in a dense fog with visibility being only a couple of inches in front of your face. Your equilibrium is off and your steps unsure. You feel claustrophobic, as the fog is so heavy. Stumble, fall, repeat. It’s unending, and you wish it would just go away. You wake with it, you go to sleep with it and in between waking and sleeping you have to come to terms with the fog.

Once you acknowledge the fog is not going to dissipate, you find a way to navigate through it by learning new techniques. With time and patience, you gradually adapt until you become adept at working within the fog.

To the outside world you “look” as if all is well and you can clearly see. And since you use a white cane to safely navigate the world, many times people will say to you, “But you don’t look like you’re blind.

Bold Blind Beauty

People don’t understand how I can dress stylishly or put on my makeup. The expectation that all blind people have to appear or behave a certain way is a huge misconception. Quite simply, the people we were prior to the loss of our vision, and the things that brought us joy, are still intrinsic to who we are today.

Handling the Stigma on Sight Loss

What I’ve found since losing my sight is there are so many stylish women who are blind or have sight loss that I felt it was time for a fashionable icon to represent them. Abigail, the white cane icon and mascot on my blog Bold Blind Beauty, is a beautiful image that evokes power, independence, chicness, confidence and success — a woman on the move stepping forward with purpose.

Once, an eye doctor told me that it would be a tragedy for me to learn how to use the white cane when, in fact, I believe the real tragedy is the shame many people feel when losing their eyesight. Having a visual image that evokes beauty, confidence and purpose is one way to change the stigma surrounding blindness.

Posted on 4 Comments

WOTM 10 Featuring Suzanne Gibson

River’s Edge

Photo of Suzanne Gibson
Suzanne Gibson

Friday’s have always been my favorite day. When I was in the corporate world it was a welcome prelude to the respite of the weekend to come. Today, I become re-energized by featuring strong, independent, influential women who happen to share a common thread of blindness or low vision.

In preparing to write these pieces I always ask the person I’m writing about for permission and request that they send me a couple of paragraphs to work from. For those with websites and social media users I can glean interesting, informative, and inspirational data that makes for a good narrative.

My advice to every young person who crosses my path, everyone actually, is to keep pursuing what it is that you love. If you are creative, create. Do not be too busy; do not tell me about your limited budget. Find a way to do something. I did not always follow this advice. I became distracted many times with life.

Suzanne Gibson, a very talented local artist who owns River’s Edge studio in New Brighton, PA, is no exception to the unbelievable fortitude of people I hold in the highest regard. Prior to contacting her, I saw some articles written about her in a few of our local newspapers.

Suzanne Gibson Painting His Majesty (a very colorful majestic bird)
Suzanne Gibson
“His Majesty”

I knew Suzanne experienced vision loss and yet she was still passionate about her art. What I didn’t know were the other extraordinary circumstances she went through that were unrelated to her loss of vision.

The tumor was growing again, and I would need radiation. The daily radiation treatments lasted 6 weeks, but recovering took much longer. To add to this challenge, the week after I finished radiation, I received the news that my visual acuity was 20/200 and that I could no longer drive.

I think for most of us, to receive a simultaneous diagnosis of vision loss and a brain tumor, would be devastatingly frightening. Just when Suzanne was beginning life anew as a painter she had to endure this inconceivable news.

After her first brain surgery, Suzanne’s inspiration to keep moving forward was found in the works of blind artist John Bramblitt. She began painting canvasses and contemplating her second chance at life. While Suzanne was considering the direction her life would take next, life dealt her another blow.

The brain tumor was back. After another brain surgery and a 6 week course of daily radiation therapy, the recovery period this time around was considerably longer than the first time. With the added complication of worsening vision, Suzanne was introduced to adaptive devices to aid her in continuing to paint and live independently.

…without Lex Luther, there is no Superman and without this ‘disability’, I would not be painting the way that I do. This vision loss that could have struck me down has, instead, led me to explore myself and dig deep into my soul to paint expression and feeling.

During the experimental painting phase, while using the adaptive devices, there were some initial disappointments but then Suzanne created a piece aptly named Enjoy the Moment.” When I look at this painting I’m reminded of an indescribably beautiful summer day. The explosion of reds, yellows, oranges, greens, blues and purples along with the curves and angles of the two flowers tickle the senses. I can even imagine feeling the warmth of the day while hearing the birds sing as I inhale the sweet scent of the flowers. It’s a beautiful moment. The success Suzanne gained by this painting gave her the confidence she needed to continue her craft.

Suzanne Gibson Enjoy the Moment
Suzanne Gibson
“Enjoy the Moment”

Suzanne sent me 3 of her paintings which I’ve included in today’s post. I like and appreciate all 3 for different reasons but ‘My Nemesis was the one that really spoke to me. As soon as I saw it, without knowing what the cause of Suzanne’s loss of vision, I thought “this reminds me of my central vision loss.” So when I looked at an essay she wrote with the same name as the painting it clicked.

Suzanne Gibson Painting "my nemesis"
Suzanne Gibson
“My Nemesis”

Suzanne was diagnosed with Stargardt Disease an inherited vision disorder with macular degeneration that typically affects younger people. The macula, located in the center of the retina is responsible for detailed central vision needed to read, drive, recognize faces, etc.

Suzanne, you are an amazing example of what a person can achieve even when faced with adversity. Your strength, determination, and courage are admirable and you are a remarkable role model.

I’d like to encourage you to visit Suzanne’s website at www.riversedgestudio.com to see some of the offerings. In ending today’s post, because I like Suzanne’s philosophy on life, I’m using one of her quotes.

“My advice remains the same: enjoy the moment- do not wait for tomorrow. You do not know what that day will bring. However, when you do reach tomorrow and it is not what you thought it would be, REVISE!” ~Suzanne Gibson

Posted on 7 Comments

WOTM 7 Featuring Karen Rowie

“Friendship is unnecessary, like philosophy, like art… It has no survival value; rather it is one of those things that give value to survival.” ~C. S. Lewis

Today I felt moved to talk about a friend of mine who probably doesn’t even know how she’s affected my life. When I think of the paradox of how fearful I was of blindness, then enduring my vision loss, I sometimes wonder if becoming friends with a blind girl somehow prepared me for what was yet to come.

My very first personal foray into the world of blindness was when I introduced myself to Karen Rowie. Karen was a couple of years younger than I and I remember when the neighborhood kids would be playing outside Karen would sit alone on her porch.

I would love to be able to say that it was on my initiative that I met Karen when in fact my mother instructed me to do so. My mother and I always had somewhat of a strained relationship but this one simple act of kindness, she demanded I do, would change my life in such a way that even today I still feel the impact.

It was with trepidation that I approached the steps to Karen’s porch and I was seething with anger that my mother was making me do something that felt so uncomfortable. Fear of saying or doing the wrong thing enveloped me like a cloak because the only prior exposure I had to blindness was what I learned in school about Helen Keller.

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.” Henri Nouwen

One of the things I didn’t understand about Karen, and until recently didn’t know there was even a word for it, was that she exhibited blindisms. Blindisms are behaviors sometimes found in blind children such as body rocking, head swaying and eye rubbing. I don’t know why Karen moved like she did and after I got to know her it really didn’t matter.

After I got over my initial awkwardness of meeting Karen, I enjoyed hanging out with her. We would go to the movies (I would narrate), take the bus into the city (Pittsburgh) and go to what is now called the Western Pennsylvania School for Blind Children.

Karen’s parents were very protective of her and because of this she was not allowed to leave the porch. So I would sit with her while she would read to me one of her Braille books or I would do likewise with a printed version. At times some of the other neighborhood kids would come by as well and Karen would get so excited to have attention lavished upon her.

“One of the most beautiful qualities of true friendship is to understand and to be understood.” Lucius Annaeus Seneca

Karen was such a sweet person and I may not have known it then but I realize that having her come into my life was a defining moment. What I learned from my friendship with her was that she was like any other kid who wanted to laugh, play, go to the movies and be accepted by her peers. I also learned that Karen’s blindness was only one of many characteristics which added to her uniqueness.

It’s been many years since I’ve last seen Karen and wherever you are I just want to thank you for being my friend. If by chance you see this post please contact me by email at boldblindbeauty@gmail.com.

Thank you

Steph

“Walking with a friend in the dark is better than walking alone in the light.” ~Helen Keller